Friday, April 28, 2017

May is National Brain Cancer Awareness Month.

Yet It’s More Than That!

         May is National Brain Cancer Awareness Month. I’m not particularly fond of May because that is the month when I have to wrestle the most with a deep sadness that will never go away.
I lost my son, Alex, on May 24, 2013, after his nine-year struggle with a cancerous monster called an oligoastrocytoma. Alex was a fire apparatus engineer for CAL FIRE and the cancer was deemed job-related. I could go on and on about the treatments, the fears, the unknowns, and the devastating effects of his cancer, but that’s not what I am writing about today. No. With Mother’s Day on the horizon, I am writing about being his mom, about loving and caring for him for the thirty-nine years he shared his incredible life here on Earth with us, and in particular, the last few years when motherhood included a new facet, that of caretaker.
            When Alex died, I can remember my father saying, “You must be relieved.” What? I was horrified. Relieved? No. I was heartbroken, truly. I am quite sure, before May 24, 2013, I had no real understanding of what it meant to be heartbroken, but I know now. It’s okay. I can live with a broken heart because I know my sadness equates to the love I had, and still have, for my son, Alex.
            So. What about love? What about caring? I feel that as Alex’s mother, and a caretaker, that I was lucky. “Lucky?” one might ask. Yes, I was lucky because I had the privilege of spending incredible moments with my son, especially during the final years, months, days, and hours of his life. Let me share a few.
I remember sitting at the kitchen table talking about his cancer. “What have you learned through all this, Alex?” I asked.
“Patience,” he replied without skipping a beat. “And you?”
“I have no control,” I told him just as quickly. “I have control over nothing but myself.”
Alex and I had many conversations and laughed heartily about people he had worked with, about crazy relatives, about nature, and about politics. We talked about life in general, and we talked about death. “It’s going to happen to me, too,” he said one day when we received word that a friend of his also had died of brain cancer. I won’t forget that moment because I could only nod in agreement. I could not have uttered a word because impending grief was a bird on my shoulder.
Caretaking was never ending: waffles and blueberries for breakfast, half a sandwich for lunch, med allotments, showers (“No, I’m not looking!”), combing, shaving, toenail cutting, and keeping the calendar straight, for we had countless medical appointments and just as many visitors, including Hospice.
 As the illness progressed, I learned to dress him, manage the wheelchair, help him in and out of bed and onto the toilet, wipe his butt, help him brush and gargle, adjust his television, tuck him in bed. “Mom, can you get my tiger blanket,” he asked over and over when dementia set it.
            I’m a writer, so it was not unusual for Alex to ask me to read to him. I read my second novel from cover to cover. “Read more,” he would say. “Just a little more.” I love re-envisioning the hours we spent, just the two of us, he lying on the couch under his blankets (the tiger one on top), with me having commandeered his wheelchair, reading, listening, loving, caring, and never, and I mean this sincerely, feeling burdened by it all.
            And in the end, when Alex was bedridden, in diapers, catheterized, confused, and unable to swallow, I listened for hours to his ramblings, most totally incoherent, a few making sense. “My dog is waiting for me,” he said two days before the end, followed by  “Somebody dumped out my out-of- county bag, the F%^#r.”
            Taking care of Alex was the greatest gift I could have been given. It cemented our love and it taught many lessons about how we human beings live our lives and face death. I am relieved only that Alex is no longer suffering. I would give anything to hear his voice again asking, “Mom, could you please get me my tiger blanket?”

Note: It is also important to share here that my husband, Alex’s step-dad, was an incredible caretaker as well. I’m not sure I could have managed without him.

My memoir – Tumor Me, The Story Of My Firefighter